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For Raechelle “Rae” Villanueva of Kaimuki, the popular catchphrase of “living with COVID” has an entirely different meaning from what most people take it for as the pandemic stretches on into a third year.
Villanueva, a teacher at Waialae Elementary Public Charter School, is living with long COVID after testing positive for the coronavirus in late January.
She does not know where or how she got infected, but will always think about it as she continues struggling to get her health back.
“If you want me to live with COVID, then help us live with it then,” said Villanueva. “I didn’t go to the emergency room or ICU, but I’m trying to seek treatment so I can live with it, because currently, living with it means being housebound and bed-bound.”
Villanueva, 40, of Kaimuki, used to run marathons and live an active lifestyle. The high-energy mother of two was vaccinated and boosted against COVID-19 and had no underlying health issues.
She loves teaching, and has been a teacher’s advocate and mentor for the Hawaii State Teachers Association. In 2020 she was the recipient of its S.T.A.C.Y. Award for Teaching Excellence.
The day she caught COVID-19 has changed her life, and she clearly remembers it.
After working on a Tuesday, she recalls feeling really “off,” then came down with a sore throat in the evening, followed by a fever the next day. She tested negative on a rapid antigen test at home but decided to call in a substitute and get a PCR test.
She would eventually test positive for the coronavirus and isolate at home, expecting to get better after a week or so, but that did not happen.
After the fifth day she would have been able to return to work under current guidelines, but she was not feeling better or physically able to do so.
Instead, Villanueva said, she cycled through new symptoms daily for up to 16 days, experiencing everything from a loss of taste and smell to brain fog, piercing migraines, swelling hands and the “shakes,” or tremors, after physical exertion.
She saw several doctors before an infectious disease specialist informed her she was suffering from long COVID.
The doctor prescribed her medications for inflammation, which initially helped, but six months later she is still seeking help for other persisting symptoms such as the shaking, joint pain and fatigue.
It was a challenge navigating the health care system for help, she said, and she encountered many who were unfamiliar with what long COVID was.
Now she is on a waiting list to get an appointment at The Queen’s Medical Center’s Post-COVID Recovery and Care Clinic, which specializes in long COVID. The earliest one available isn’t until September.
Today, living with long COVID means having to plan ahead because of post-exertion exhaustion, and weighing the risks of daily activities she never would have given a second thought to before. She is no longer able to run or work out.
She somehow managed to finish out the school year after a three-week absence, finishing each teaching day in pain, and was unable to teach summer school this year.
So as others go about their lives and continue “living with COVID,” she wonders whether she is suffering in silence, alongside others going through the same ordeal.
Long COVID reality
Villanueva, however, is not alone.
She is part of a growing number of infected residents nationwide — an estimated 1 in 5 adults, according to a recent study by the U.S. Centers for Disease Control — who go on to develop long COVID, or post-acute sequelae of COVID-19, following an infection.
CDC defines long COVID as having a wide range of new, returning or ongoing health problems four weeks or longer after first contracting the coronavirus, which can last weeks, months or years.
Symptoms range from shortness of breath to cough, chest pain, fatigue, brain fog, insomnia and high heart rate. Patients often experience a combination of these symptoms, but oftentimes have X-rays or blood tests that come out normal.
An estimated 10% to 30% of people who contract the coronavirus will develop long COVID, according to Dr. Dominic Chow, a physician with Queen’s Post COVID Recovery and Care Clinic.
Symptoms vary from person to person, according to Chow during a conversation Friday on the Honolulu Star-Advertiser’s “Spotlight Hawaii” livestream program, with no two patients alike.
There is no specific treatment for long COVID itself, so the clinic’s approach is to offer therapies targeting specific symptoms, whether it be chest pain or shortness of breath. But treatments at the moment are limited.
At Kaiser Permanente the approach is similar.
There is no centralized clinic for long-COVID patients, but primary care physicians are trained to be aware of the condition and can refer patients to a network of specialists, according to Dr. Abby Pandula, Kaiser internal medicine specialist.
Kaiser might offer long-COVID patients a combination of treatments, including relaxation techniques to help with sleep problems, medications for pain or headaches, and counseling for emotional and mental health problems.
“Our behavioral health specialists are aware of long COVID causing anxiety, depression, insomnia and PTSD,” said Pandula.
These patients need understanding and support, she said. The symptoms can also be difficult to pinpoint sometimes, and those who have been infected should be on the lookout for new symptoms, including difficulty concentrating, and be sure to follow up with their primary care physicians.
During the omicron surge, Chow said, many patients have had milder long-COVID symptoms compared with initial waves, when patients were hospitalized. Those hospitalized tend to be at higher risk for developing long COVID, he said.
And yet, recently, many patients with mild cases have gone on to develop long COVID a few months after their initial infections.
The number of patients with long COVID continues growing, and the average wait time for an appointment at the Queen’s clinic is now about eight weeks.
While many long-COVID patients at the clinic recover within about a year, he said, about 15% continue to suffer despite various attempts at treatments beyond a year.
“Many of those individuals cannot work,” he said. “They’re now on disability.”
Workforce impacts
The state of Hawaii has no formal accounting of how many people are out of the workforce due to long COVID, although numerous sectors are struggling with shortages.
A recent study by the University of Hawaii Economic Research Organization, however, found about 31% of adult residents surveyed in May suffered from long-term symptoms after contracting COVID-19.
Of those suffering from long COVID, about half reported that their symptoms were medium to severe. The most common symptoms were cough and shortness of breath, followed by extreme fatigue, mental fog and headaches.
The Brookings Institution in January issued a report estimating long COVID could be responsible for up to 15% of unfilled positions in the U.S., although lack of data makes it difficult to estimate this accurately.
In the United Kingdom an analysis by the Bank of England noted long-term sickness and long COVID as among the main drivers of the shrinking workforce there.
Today, long COVID still remains a mystery, with numerous studies underway to understand it. While there are some hints to underlying causes, those answers remain elusive.
As part of a national initiative funded by Researching COVID to Enhance Recovery, or RECOVER, The Queen’s Medical Center and the University of Hawaii John A. Burns School of Medicine are studying why some people in Hawaii develop chronic symptoms.
Researchers seek to understand, prevent and treat long COVID, and hope to determine whether there are ethnic differences or risk factors that predispose one to the condition.
Chow said due to misinformation, some long-COVID patients feel isolated because family and friends do not understand or believe they really are suffering from the condition.
There are now resources out there, including long-COVID support groups, he said, and no one should suffer alone.
It’s also still a good idea to remain vigilant and protect oneself from catching COVID-19.
“I know people are exhausted from the pandemic,” he said, “but we shouldn’t lose sight that these are serious health concerns and that we can’t take our eyes off of this.”
Villanueva is determined to continue teaching but anxious about returning to her classroom this school year.
She fears she will get reinfected, especially as previous mitigations such as masking and quarantining have been dropped amid the push for a return to normalcy.
Hawaii’s daily average case counts and positivity rates have been trending down for the past few weeks, but epidemiologists are expecting another wave due to BA.5, a more transmissible omicron subvariant that has a greater ability to evade immunity.
Experts say BA.5 is driving up case counts and hospitalizations again in many mainland states.
Villanueva is wary that with all she is going through, a reinfection could potentially put her out of work for good.
“I’ve been doing this (teaching) for 17 years,” she said. “I love what I do, and I want to keep doing it. What keeps me going is my students.”
LONG COVID ONLINE SUPPORT GROUPS
>> wearebodypolitic.com
>> longcovid.org
>> survivorcorps.com
JABSOM long COVID study
Those interested in participating in the RECOVER study by JABSOM can email COVID@hawaii.edu or call the team at 808-692-1335.
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